by Marilyn Brandt Smith
I am a totally blind senior citizen, and a rather assertive self-advocate. Perhaps that’s why I put off my total hip replacement until I was almost immobile. Stubborn isn’t always smart. I never expected my diabetes to be denied by someone in charge of my medical care. Being one’s own advocate or having someone close at hand offers security when, for whatever reason, you are not in control.
Often the first day in the hospital is the most frustrating. Changes in medication after surgery, transfusions, and infections aren’t always explained as well as they should be. You may wake up in a different room or unit than you expected. If you are not emotionally strong enough or mentally coherent enough, because of medical procedures, have someone you trust at hand to ask questions, make contacts, or register complaints on your behalf.
My first disappointment came when I was denied ice or water to soothe my parched throat when I awoke after surgery in my hospital room. My friend and driver grabbed a washcloth, soaked it with water, and stuffed it into my mouth, time after time, until the nurse finally authorized my original request. It was frightening to realize that my first need and cries for help were so blatantly disregarded.
A hospitalist was in charge of my prescriptions. It is common today for primary care physicians to delegate hospital rounds to doctors trained for that purpose. My hospitalist refused to prescribe my regular dose of Metformin, insisting that my readings were acceptable, and that I might not really be a diabetic. I was afraid that without my medication my glucose readings would go over 200, and I knew that in most hospitals, that would necessitate an insulin injection. This would take control away from me, and might present problems when I reverted to my Metformin at home. “I think it’s time to bring my primary care physician into this decision,” I suggested, reaching for the phone. At last, he relented, and ordered my regular prescription. My readings remained normal throughout my hospital stay.
Since I was in a fog during most of the first day, due to pain medications and a general anesthesia, I missed the incidents when my husband came to my defense. When the techs had difficulty drawing blood, he told them that my veins were always hard to find, and that a butterfly device was often necessary. When one of the nurses panicked when she could not get a blood pressure, he advised her that my readings were almost always in the normal range. She reluctantly agreed to take it again before calling in the cavalry, and my blood pressure was fine.
Although my surgery and physical therapy (they had me walking on the first night) went so well that I was released on the third day, I gathered valuable advocacy experience. If you don’t have close friends or family who are willing to visit you in the hospital, talk to the doctor and nurses after you’ve signed the appropriate papers, and help guide planning during your treatment. If you are unable to do so, then you should contact the Agency for Aging in your area; a senior citizens’ facility; a diabetic or similar clinic that understands your special needs; a blindness service or consumer organization such as the National Federation of the Blind, local chapter; or a social service agency in your community. They may be able to offer contacts who will volunteer or could be hired to provide these services for you.
If you are blind, you should expect the hospital staff to have received enough in-service training to orient you to your room and to other treatment or therapy rooms you need to visit. If they haven’t, be bold but not angry. Orient them to your needs, or have your chosen advocate do so. Some hospitals routinely require a sign stating that a patient is blind or disabled, and asking staff to announce themselves when entering the room. If this service offends you, talk with the supervising nurse and explain your reasons for objecting to the sign. I did not find the presence of a sign offensive. The food service people knew to tell me where things were on my tray, and janitorial personnel told me what they were going to be doing in my room.
Whether you can see or not, it makes sense to practice using equipment so that the staff will know how much help you might need in the future. Show them that you understand how to manipulate your bed, use the TV remote, and find your phone or water. Don’t make a scene or let your family or friends make a scene about the little things. Forget the dietetic custard you thought you ordered, and eat the sugar-free Jell-O, or skip dessert. Wait until the next shift if the TV remote doesn’t get replaced right away. The professionals will respect you more, and listen to your ideas, if they realize that you respect their time and their responsibility to other patients on the floor. Save your battles, if necessary, for medical or communication issues.
Sometimes it helps to chat up your nurses or therapists. You want them to see
you as a person, not a disability. If they understand that you have family
or friends that you wonder about, hobbies and favorite books or TV shows, they are more likely to relate your life to theirs. You might want a special favor or need an ally, and establishing a few good contacts makes it easier. I made friends with a nurse on the night shift. He was especially helpful with my orientation and with answers to self-care questions.
When you are admitted to the hospital, you will be required to furnish information about a living will, medical power of attorney, or other healthcare directives. These documents not only protect your wishes, but they help allay the trauma your family may face in making decisions for you. The new HIPAA regulations protect your privacy, but they do not provide a way for friends and family to know about your care unless you have healthcare directives on-file. Medical personnel are not allowed to reveal much about your treatment, and you don’t want to discourage attention from those who care about you.
It is important to keep information in your wallet as to where your healthcare documents and records can be found, whether you have a serious medical condition or not. It’s a good idea to wear medical identification jewelry if you require any regular medications or have other health issues. If you depend on an insulin pump, an internal cardiac device, or have a joint or organ replacement, additional medications or special procedures may be required. Carry this information and a list of regular medication dosages with you in case of emergency.
Many patients wonder why their medications change so drastically while they’re in the hospital. Your diet, your blood pressure, metabolism, and all other bodily functions change under stress and because of medical procedures. As a result, levels and types of medications administered have to change for your safety. This should be expected. When you go home, your medications may be very different from what they were before you entered the hospital. Be sure that you are aware of all the changes, and that you, or a home healthcare professional, can monitor any levels that may need to be adjusted frequently. Be sure you have a contact number when you leave, in case you have unexpected side effects or experience complications for which you’re not prepared.
I’m pleased to tell you that my six-month X-ray showed my hip to be healing
on schedule. I climb stairs, exercise, and walk all I want to. My home healthcare,
physical therapy, and testing of coumadin and oxygen levels proceeded like clockwork.
My glucose levels, 6.2 A1c, and diabetic medication are the same as they were
before I entered the hospital. I’m glad I was able to take up for myself
over the diabetes issue when I was in the hospital, but also very glad my husband
and my friend were there to look out for me when I was too incapacitated by
anesthesia and pain medication to do it for myself. Be sure you’re prepared
in the event you have a planned or an emergency stay in the hospital.
About the Author
Marilyn Brandt Smith holds degrees in English, education, and counseling psychology and has worked in rehabilitation in several states. She has written for, and edited, small-circulation magazines and is the primary editor of a disability anthology, “Behind Our Eyes,” published in 2007. Marilyn was the first blind Peace Corps volunteer. She lives with her family in Kentucky. E-mail her at: firstname.lastname@example.org.